Tuesday, February 28, 2017

Update: Acute Porphyria FDA Meeting March 1st!

Update: Acute Porphyria FDA Meeting March 1st!
Based on the agenda, we will be welcoming live questions at designated points during the meeting via live chat. Please comment/provide your questions in the chat section on the webcast. If you are unable to provide question(s) there, please email your question(s) to Jessica at
To view the meeting live, we will have a webcast streaming in real time. Here is the link: https://youtu.be/AX20OvotxHA
We have attached the link for the PFDD Meeting Agenda for your re-view. Here is the link:
If you are planning to speak at the FDA Meeting, please submit your speech to the APF TODAY to lyonapf@aol.com. You are welcome to say whatever you want, however, we need everyone’s story sent in order to know where to place you within the program.
Contact us with any questions!
We can't wait to see everyone!!
"Remember....Research is the key to your cure!"

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Genetic Changes in Porphyria

Each form of  porphyria  results from mutations in one of these genes:  ALAD ,  ALAS2 ,  CPOX ,  FECH ,  HMBS ,  PPOX ,  UROD , or  UROS . ...